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The perception of sickness

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There is a fundamental distinction between illness – the sufferer’s belief that something is wrong with them – and disease, which is a definable medical disorder that can be objectively identified according to agreed criteria. You can have a disease (such as early-stage cancer or coronary heart disease) yet not feel ill. Conversely, you can feel ill even though a doctor cannot detect any evidence of disease.

Many people who end up presenting themselves to a doctor have no identifiable organic disease. There is apparently nothing physically wrong with them. Yet they are still there in large numbers, claiming (and, in most cases, genuinely believing) that they are unwell. They are often referred to in rather loaded terms as ‘the worried well’. But the majority of those who are suffering from vague, undiagnosed illnesses are not malingering. They really do feel ill and their ability to lead a normal life may be significantly impaired.

According to a report by the Royal College of Physicians and the Royal College of Psychiatrists, as many as half of all those who present themselves as out-patients for ostensibly medical reasons are suffering from psychological problems. Although they have physical symptoms such as pains, palpitations or breathlessness they have no detectable physical disease. Doctors perhaps understandably focus on the physical symptoms rather than the psychological problems. One consequence is that huge amounts of time and money are wasted on diagnostic tests and treatments for elusive diseases.

A substantial proportion of patients – a fifth or more – prove very difficult for doctors to deal with. Either their illness cannot be diagnosed at all, or, when a diagnosis is proposed, they find it unacceptable. Their treatment, if any, is frequently ineffective and they keep returning to the doctor over and over again, distressed and dissatisfied. These are the so-called heartsink patients. To make sense of what is going on we must once again turn to the mind.

Health and illness lie along a continuum. Often the dividing line between the two is arbitrary, and as much a reflection of our perceptions and expectations as it is of our true state of physical health. Our psychological and emotional state affects our sensitivity to bodily symptoms, our perception and interpretation of those symptoms and, finally, our propensity to seek medical help – whether or not those symptoms reflect a genuine disease.

Those who seek medical care do so because they have noticed certain symptoms, concluded that these symptoms constitute a real or potential illness, and decided to take action. Each of these steps is open to psychological and emotional influences. Individuals differ enormously in the extent to which they monitor their own health; in their willingness to put up with pain, discomfort and worry; and in their readiness to do something about it. The processes that culminate in a decision to visit the doctor depend on factors that are unique to each individual, including their social and financial circumstances, personality, experience, cultural background and genetic make-up. A lot can also depend on their current psychological and emotional state.

When a person is stressed or anxious they may become preoccupied with their health. There is a greater likelihood that they will notice (or imagine) physical symptoms; interpret those symptoms as indications of disease; and become sufficiently anxious about them to visit a doctor. They may also be more in need of the personal attention that they are perhaps not getting from others.

The heightened arousal that accompanies anxiety can make subtle bodily symptoms more noticeable. Moreover, the physiological changes that often accompany anxiety, such as headaches, churning guts or palpitations, may be interpreted as symptoms of disease. The mind can unconsciously create a medical mountain out of a molehill.

Our own perceptions are not the only ones that matter when it comes to assessing our state of health. The perceptions of those around us can also play an important role. Social pressures can reinforce, or even create, the perception that we are ill.

Imagine you are under a lot of stress. (Perhaps you don’t have to imagine.) You have been told you are going to lose your job, your partner has left you and your personal finances are in meltdown. Unless you are exceptionally self-possessed your behaviour patterns will change noticeably. Perhaps you no longer relish the prospect of going for a drink with your friends; you feel depressed so you decline social invitations; you sleep badly and come to work looking tired; you are preoccupied with your problems and your performance accordingly suffers; you become irritable or keep bursting into tears; you go off your food and lose weight, or perhaps you turn to comfort feeding and pile on the calories instead.

Your friends and colleagues notice these changes and comment on them. They keep remarking that you don’t look well; it must be the stress; perhaps you should see a doctor. Come to think of it, you don’t feel too marvellous. Those headaches and the constant fatigue might be significant, and you have lost weight.

Before long you have convinced yourself that you are ill. You have certainly read enough magazine articles to know that stress is bad for your health. You take to your bed, or perhaps you trot off to see your doctor. To put it in the language of social psychology, social pressures have encouraged you to take on the ‘sick role’. Now, you may indeed be genuinely ill; as we shall see, there is no doubt that stress can make us more susceptible to disease. But the thought processes that have led you to the conclusion that you are ill were driven largely by social pressure. Other people’s minds, as well as your own, were involved in the process.

Consider, for example, the case of Colin Craven – the hypochondriac from hell in Frances Hodgson Burnett’s children’s classic The Secret Garden.

The obnoxious, bedridden Colin has been treated as an invalid, doomed to an early death, for all of his ten years. Everyone in Colin’s orbit unquestioningly accepts that he is destined to be a crippled hunchback – that is, if he lives at all. They continually reinforce Colin’s belief in his illness, reminding him of his weakness and urging him to rest. As one would expect, lying in bed all day has had a seriously debilitating effect on Colin’s muscles; on the rare occasions when he does get up he feels genuinely feeble.

The egregious brat lies in bed all day with the family retainers pandering to his every whim. The servants live in fear of Colin’s hysterical tantrums and dare not contradict him. The housekeeper privately recognizes that Colin is a victim of self-indulgence and hypochondria but would not dream of saying this to his face. To make matters worse, Colin’s doctor is next in line to inherit the family property should Colin die and is therefore less than objective about the child’s health. A London doctor who has had the temerity to suggest that Colin is not ill has been studiously ignored. Colin is immersed in his all-consuming hypochondria and sublimely unaware of how spoilt and unreasonable he is. Until his cousin Mary arrives.

Mary (who is not the nicest of children herself) rubbishes Colin’s alleged medical condition during a fit of pique. She tells Colin bluntly that he has no trace of a lump on his back and is just being hysterical.

By challenging the unquestioned belief in Colin’s illness, Mary has an electric effect on him. The supposed invalid soon comes to realize that there isn’t anything wrong with him beyond his morbid state of mind. There is no lump on his back; he is thin and pallid because he refuses to eat properly; and he is weak because he lies in bed all day.

So long as Colin shut himself up in his room and thought only of his fears and weakness and his detestation of people who looked at him and reflected hourly on humps and early death, he was a hysterical, half-crazy little hypochondriac who knew nothing of the sunshine and the spring, and also did not know that he could get well and stand upon his feet if he tried to do it. When new, beautiful thoughts began to push out the old, hideous ones, life began to come back to him, his blood ran healthily through his veins and strength poured into him like a flood.

With the help of cousin Mary, her rosy-cheeked proletarian chum Dickon and, of course, the Secret Garden, Colin is soon transformed into a ‘laughable, loveable, healthy young human thing’ who announces to the world that he is going to ‘live for ever and ever and ever’.

A more delicate literary example of an indeterminate illness born of circumstance can be found in Tolstoy’s Anna Karenin. Young Kitty Shcherbatsky declines an offer of marriage from the worthy but unworldly Levin, expecting instead to receive a proposal from the dashing Count Vronsky. When Vronsky’s anticipated proposal fails to materialize, Kitty, like a good nineteenth-century heroine, goes into a severe physical and mental decline which lasts for months. It is serious stuff and everyone is worried about the poor girl’s health. Kitty’s family doctor discusses her condition with a celebrated specialist whose help has been enlisted by the worried family:

‘But of course you know that in these cases there is always some hidden moral and emotional factor’, the family physician allowed himself to remark with a faint smile.

‘Yes, that goes without saying’, replied the celebrated specialist …

Kitty’s family and friends are worried even though they are well aware that her condition has essentially psychological origins. Kitty is described as ‘ill for love of a man who had slighted her.’ Kitty’s health does not improve and it is feared that she might actually die. Her anxious parents therefore take her on a foreign tour, where she encounters another young lady whose illness is also ‘due to a love affair’. The passage of time and the distractions offered by foreign travel eventually bring about Kitty’s recovery. Her illness and absence also allow circumstances to develop in her favour; she returns to Russia, marries the faithful Levin and (unlike the eponymous Anna) lives happily ever after.

Another way in which mental processes intrude into the domain of physical health is through the universal need for legitimacy. When we have decided that we are ill we want other people, and especially our doctor, to accept that we really are ill and not just malingering or being neurotic. Whether consciously or unconsciously, we want our putative disease to be accepted as genuine and not dismissed as a product of our fevered imagination. We need to legitimize our sickness by presenting the doctor with symptoms that will be accepted as evidence of a known organic disease. After all, no diagnosis means no treatment. As we saw in chapter 1, this can be a real problem for those suffering from poorly understood and controversial disorders such as chronic fatigue syndrome.

In his fascinating historical study From Paralysis to Fatigue, Edward Shorter has described how the physical symptoms that characterize so-called psychosomatic illnesses – those vague, undiagnosable ailments whose physical causes prove so elusive – have evolved over the years to keep pace with changing ideas about what constitutes a genuine disease. As society’s perceptions and beliefs about disease have changed, so the symptoms of psychosomatic illness have also changed to keep pace with what is regarded as legitimate evidence of disease. Thus, in the eighteenth and nineteenth centuries it was common for people to succumb to hysterical paralysis, convulsions or ‘fits of the vapours’. Paralysis of the legs was positively de rigueur among well-to-do young ladies of the nineteenth century. Nowadays, some would regard the symptoms of chronic fatigue and allergies as falling into the same category.

Shorter’s historical analysis is interesting in that it demonstrates the powerful effect social pressures and cultural norms can have on patterns of symptoms. Actual diseases are another matter, however. There is nothing imaginary or unreal about many cases of chronic fatigue syndrome, allergies or other supposedly fashionable illnesses.

Our expectations also have an important influence on our perception of health. In industrialized societies like Britain and the USA general expectations of health have risen considerably in recent decades and continue to rise. As in so many other spheres of human activity, a consumerist attitude towards health has become the norm. People demand more in terms of their physical and mental wellbeing and are less willing to tolerate minor health problems which detract from their quality of life. That elusive – and probably illusory – gold standard of total health is increasingly demanded as of right even though, to quote one expert, ‘deviance, clinically or epidemiologically defined, is normal’. This emphasis on positive health, as opposed to the mere absence of disease, is reflected in the explosion of interest in complementary or alternative medicine.

Huge advances in living conditions and medical knowledge have brought about large increases in life expectancy in many countries during the course of the twentieth century. Yet despite this we are apparently a sick bunch and getting sicker – if, that is, we define sickness in terms of perceptions and behaviour as opposed to objective measures of physical health.1 Studies conducted in the USA in the late 1920s found an average of eight reported episodes of sickness for every ten people surveyed over a period of several months, whereas in the early 1980s the comparable figure was twenty-one sicknesses: an increase of 160 per cent. If we define sickness as seeking medical attention then the average person nowadays is ‘sick’ more than twice a year, compared with less than once a year in the 1920s. To be sick is normal.

Of course, what has increased over the decades is not the true incidence of diseases: it is our sensitivity to aches and pains; our tendency to ascribe them to physical diseases; our reluctance to put up with them; and our readiness to seek expert medical care.

Perish the thought, but just occasionally some of us have been known to concoct a tactical minor illness to get ourselves out of a predicament – perhaps as an excuse to avoid a dire social occasion or, less blatantly, to justify our poor performance in an exam, at work or in our personal relationships. Outright lying need not be involved. Gentle self-delusion is all that is needed. When sickness becomes an escape route from an unpleasant situation or embarrassment it is all too easy to convince ourselves that the symptoms are genuine. The ‘sore throat’ that conveniently gets the anxious child out of having to perform in the school concert can feel like a real sore throat.

Our minds, like Colin Craven’s, can exaggerate the severity and significance of symptoms, causing us unnecessary distress and wasting doctors’ time. But perceptions can shift in the opposite direction as well. An inert placebo ‘drug’ will often produce startling improvements in a patient’s symptoms – provided the patient believes it to be a real medicine and expects it to have a beneficial effect. (We shall be revisiting the placebo effect later; it is yet another example of why the mind cannot be divorced from bodily health, even when we are dealing with apparently straightforward physical diseases.)

We all have the capacity unconsciously to blot out things we find too uncomfortable or upsetting to think about. This psychological defence mechanism is known as denial. However, the mind’s ability to belittle or even ignore symptoms is something of a mixed blessing. Being excessively stoical or negligent about your own health is risky.

When people react to illness by denying the reality of their symptoms they may save themselves the unpleasantness of confronting an unpalatable reality. But their denial can be positively dangerous if it prevents them from seeking timely medical attention. A woman who fails to notice a lump in her breast, for example, or chooses to disregard it until her breast cancer is at an advanced stage, may pay for her insouciance with her life.

It is an unfortunate fact that people are less likely to seek medical help if it is difficult, inconvenient or embarrassing for them to do so – perhaps because they are too busy, or cannot afford the fees, or because they are simply afraid of calling a doctor out on a false alarm. Heart attacks are notoriously more likely to prove fatal at weekends, when it is inconvenient or potentially embarrassing to seek expert medical help. The lives of countless heart attack victims might have been saved had they not incorrectly attributed their chest pains to indigestion.

The disastrous consequences of denial are sombrely portrayed in Arnold Bennett’s Riceyman Steps. The tightfisted Clerkenwell bookseller Henry Earlforward has cancer of the stomach but steadfastly denies that he is ill. Earlforward insists that it is merely a temporary indisposition and that he has a constitution of iron.

For a long time Earlforward’s wife interprets his lack of interest in food as a symptom of his miserliness rather than any medical problem. Even when it becomes obvious that the emaciated bookseller is gravely ill he obstinately refuses to be examined by a doctor, let alone admitted into hospital. His wife rails at him for concealing from her the seriousness of his illness until it is too late to do anything about it. She tries hard to persuade Henry to accept medical help, but is forced to concede for ‘nobody can keep on fighting a cushion for ever’. Faced with Henry’s bland obstinacy, his wife and doctor eventually abandon their attempts to help him and he dies from his cancer – a victim of his own misplaced psychological defences.

Whether or not an illness has psychological origins it will certainly have psychological consequences. Feeling ill for any length of time is a psychologically debilitating experience. One of the simple but important ideas I hope to convey in this book is that the relationships between mind, body and disease work both ways. The mind affects the body and hence physical health. Conversely, physical health affects the mind and hence our thoughts, emotions and behaviour.

All but the most trivial of illnesses produce some sort of emotional reaction, whether it be mild irritation, anxiety, anger, denial or depression. Other things being equal, a serious illness should provoke a more intense emotional reaction than a minor illness. But other things seldom are equal. Illness means different things to different people, and just because an illness is not life-threatening this does not mean the sufferer will be emotionally untouched by it. An individual who has never before experienced any significant illness, pain or discomfort may be upset by relatively minor symptoms which would seem insignificant to someone who has suffered a string of serious diseases.

Our emotional responses to illness can have a crucial bearing on our recovery and future health. If being ill makes us depressed we may become careless about adhering to our doctor’s advice or taking our medicine. This may, in turn, impede recovery. Whether or not a cancer patient adheres strictly to a programme of radiotherapy or chemotherapy can have a major impact on their chances of survival. There are patients who simply give up and sink into decline.

In extreme cases the emotional reaction to an illness can prove a bigger problem than the illness itself. Severe depression is far more debilitating and intrusive than many physical ailments. As we shall see in the next chapter, severe depression can also have detrimental effects on immune function and subsequent health, creating a spiral of decline. Doctors and patients ignore the psychological and emotional consequences of illness at their peril.

Finally, please do not go away with the impression that an individual’s perception of their own health is an entirely meaningless or deceptive index, indicating only their degree of hypochondria. On the contrary. Research has shown that in certain respects perception is a good guide to reality. Although our subjective judgement is not always an accurate index of our current state of health, it does provide a reasonably good predictor of our long-term risk of dying prematurely. Depressing though it may be if you are an arch hypochondriac, the research indicates that people who believe they are unhealthy do die younger on average. Moreover, perceptions are clearly important for practical and economic reasons: people’s perceptions of their health, rather than objective measures of health, are what largely determine their initial usage of medical facilities.

The Sickening Mind: Brain, Behaviour, Immunity and Disease

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